Thoughtful Thursday: The Annual ARD

Next week brings Anna's annual ARD meeting. For the uninitiated, this is a meeting that takes place once a year whereupon a vast team of people get together and decide what goals your special needs/special education child should work on for the following year. It can be a daunting, humbling, scary, and overwhelming meeting, especially in the early years. Our ARD meetings usually have 10-14 people in attendance! We started this process when Anna turned three and was placed in the PPCD program (argh, lots of acronyms right? PPCD = preschool program for children with disabilities, ARD = annual review and dismissal). This will be our 7th meeting... the 4th at our current school with her current team. Luckily for me (and through a lot of hard work and research), I have a great team surrounding Anna and there is no friction in the group. I got the first pass of new goals yesterday to review and had a discussion with her Life Skills teacher this morning about them.

I want to take a moment to interject how happy I am that we moved Anna from Inclusion to Life Skills earlier this year. I was scared about this move (remember THIS post?) and was skeptical that it would be good for her. Well, long story short, it has been a good move. She is much happier, her behavior has vastly improved, and she is able to learn and work on her goals.

All in all, the new goals look fine. There are some that are too simple (like in Social Studies, recite the city and state in which she resides) so I pushed back on those and they will be updated, but most of them are fine. Her speech therapist feels like Anna has met most of her speech goals and is now going to focus on social skills. I think her articulation still needs work so I'll inquire about that during the meeting. Her ST is very progressive and is constantly on the look out for new techniques and therapies, so we feel pretty blessed to have her on our side.

It sounds cliché, but it really does take a village to raise a child, especially one with special needs. It's important to have a group of professionals working in the best interests of your child, so as parents it's equally important to advocate for what those interests are. Since Anna is now in third grade and about to turn ten, I've started including her in these discussions. At our last meeting when we changed her placement, I had her join us during the last few minutes. We told her about the plan and got her input and buy-in. We cannot forget that SHE is the center of these meetings, yknow?

I'm glad we're at a place where the annual ARD doesn't beget dread but instead is a relatively easy discourse on how best to help my daughter at school. That's the way it should be.

Happy New Year! and Reflections

Every year on New Year's Day, I get into a cleaning frenzy. It's like I *must* start the new year with a clean slate. I also do this mentally too... taking stock of the previous year and setting some goals for the upcoming year. I really don't do resolutions anymore; there are enough pressures I put on myself where I fail that I don't want to add even more. ;)

I did a big recap on the year yesterday when finishing up my 365 Project, so I won't rehash in detail what the year brought us. I also went through the entire year and picked out my favorite ten photos. I captured so many memories! If you want to take a peek at our Christmas season, I created a Flickr set: Christmas 2010.

I feel very blessed to continue to discover new passions. I'm 41 years old and for the last nine years have defined myself as a mom to a child with special needs. In 2010, I found an artist residing in myself... a girl I didn't know existed. Being a science and math geek my whole life, this has been a startling and rewarding discovery. Creating custom cards for clients, scrapping memories with digital scrapbooking, creating for the best designers in the business, and now exploring photography has brought a sense of peace and balance into my life. When so many of my years have been consumed with doctors, appointments, therapists, specialists, tests, ARD meetings, and worrying about my daughter's future, it's easy to lose sight of my individual self. I'm excited to see what 2011 will bring and I hope to share this journey with my friends and family. Thank you for being such a huge support as I went through the ups and downs of this stressful life and for being a spot of sunshine in my life.

Happy New Year!!!

Thoughtful Thursday: Celebrating Stasis

It has been a long time since I've written a Thoughtful Thursday post and quite a while since I've blogged about Anna. The thing is... she's doing well right now. I say that with a whisper in my voice and hesitation in my heart because with her, things change rapidly and dramatically. It's easy to blog when things are rough but finding that appreciation for stasis and celebrating it should be just as important.

The school year started off really badly. Six weeks of misery for her and the staff at school. Countless specialist appointments, endless meetings, daily reports. Changing her placement from inclusion to life skills has made an immense difference. She is participating in class, she has befriended Caroline (Anna reads her stories and gets to push her wheelchair to the bus at the end of the day), she has not been back to Room 300 (the in-school suspension room), and she is happy to be at school. Her body has finally recovered from its premature thrust into puberty last year; changing from Risperdal to Abilify is what turned that around. She hasn't had a seizure in 17 months, a new record. She is on a good cocktail of meds now too. For the first time in ages, she is stable. Stable. Most parents have no idea what a blessing this is. It's easy to take for granted having a happy kid, one who is generally healthy and well-behaved. It's agony to watch your child endure psychiatric issues, health concerns, academic problems, and social missteps. Feeling helpless is the worst feeling... as a mom, your instinct is to do anything and everything to have your child be happy.

stasis |ˈstāsis|
noun formal or technical
a period or state of inactivity or equilibrium.

We're into at least a month of Anna achieving a sort of statis... emotionally, psychologically, medically. Dare I say, there have been moments of feeling normal, even typical, in our family of late. Stability is the core of helping Anna navigate the world. When things are predictable and when she feels safe, she starts to blossom. So even though it seems like Groundhog Day here most of the time, it works. And for that, I'm eternally grateful. So, I want to challenge each of you to think about your life right now. If you are in a zone of stasis, become aware of it. Put some of the memories of this time in a bubble... write about it, take photos, record it in some way. Because the thing about stasis is that is doesn't last. Things change in a heartbeat, regardless if you have a child with special needs or not.

My nephew's father passed away last weekend. He was 39 and suffered a stroke. Curtis went to Ohio this week to be with his sister and our nephew and it's been a profound experience. Our nephew is only 12. Can you imagine having to tell your child that their father has died? Curtis has been helping the family... they've been at his house (SIL is divorced from him) gathering mementos for our nephew and cleaning things out. I got this text from Curtis yesterday morning:

"We are cleaning out his house right now and it is so striking. A life unfinished. Everywhere I look is something half done. It makes me a little ashamed for my procrastination and what people would say of me if I were suddenly gone. Umph, so heavy."

So if you have stasis in your life at the moment, celebrate it. Celebrate the routine, the mundane, the boring. Make today a thoughtful day in your life.

Thoughtful Thursday: Where are my rosy glasses?

I was typing up a getting-to-know-you questionnaire for CrumbSnatchers since we have some new designers and one of the questions was "Are you a half-full or half-empty kind of person?" You know, I used to be a half-full person. I took pride in being happy and optimistic and tackling adversity head on. I did wear rosy glasses and I liked them! In fact, I rocked them! Do you know how I answered that question today?

"It used to be half full but then life drank it and now it's half empty."

How sad is that!?!

What happened to me? There are days when I just plumb don't like myself. Like today, sigh.

I couldn't sleep last night. I tried. My mind was awake and going into those twisty, dark places. Tick Tick Tick Tick. Toss, turn, my mind would just.not.stop.

When I woke up this morning, I felt like I'd been hit by a truck. A 8+ pain day on the Holly Fibro Scale. Which subsequently led me to be a grumpy, ugly person all day. Honestly, I hate to wallow in self-pity, I HATE it but some days, I just want to scream. Enough! These kids are so hard, my marriage is so hard, my pain and my own health issues are so hard. I'm tired, I just want to lay my head down and sob for a while.

But I can't. And I won't. And it wouldn't be in character either. I don't cry. I really don't. I'm strong.

I know once I get some sleep I'll be much better. It's amazing how much this makes such a difference. Anna needs me to be a half-full kind of mommy. Well, really, my whole family does. So I drag myself through this one bad day knowing tomorrow will be better.

It will, right?

Poison

I feel like I have poison in my blood. At the end of such a long day with such a crappy ending, I have this intense dislike of my daughter's chemical imbalance in her brain and subsequent feeling that I intensely dislike her. Which of course, I don't. But it's hard to tease apart the complex layers of her disabilities, her moods, her perseverations, her aggression, her issues... and see the little girl that is trapped inside of all that. At the end of such a day, I am filled with disgust for myself, for losing patience, for hating this, for losing sight of that little girl that needs me so.

The day ended with me not talking to Anna, with me putting her to bed without her bath or bedtime routine, because I just couldn't take anymore. Her obsession with getting yet another babydoll (she has 21, yes that's right, 21 dolls) is so out of control that we saw her neurologist last Wednesday about it (changing from Risperdal to Abilify in April helped the aggression and impulse control but the perseverations are much worse). My out-of-town relatives got to witness it the weekend before last for Jenny's graduation and it hasn't eased at all since then. The neuro is changing her from Lexapro (which is just for anxiety) to Luvox (which is for anxiety and OCD) but it takes 2 weeks to transition the meds and another 2 weeks to see improvement. I called him today and left a message with the nurse that Anna is getting much, much worse since beginning the switch and if this is what we should expect. I hope to hear from him tomorrow. I also got an appointment, finally, with the child psychiatrist for June 21st. It can't get here soon enough.

I had the idea today that we could make a doll instead of buying one so I took her (and Jenny and Dominic) to Hobby Lobby late this afternoon with the intention of buying materials to make something simple. I was so overwhelmed with the sheer choices and the kids' behavior that I feel like I caved. I bought a premade doll that you just add stuffing too. I hope I didn't make a big mistake in rewarding her neverending behavior in asking for another doll. Although, frankly, if the doll obsession is satiated, she'll just find something else. I then took them to Applebee's... Jenny and I have been on Weight Watchers for over three weeks now and I'm tired of cooking. They have WW point meals there and though we really shouldn't have spent the money, with Curtis and my mom out of town the last few days, I was just too wrung out to cook another meal. It didn't go well.

As soon as we entered the restaurant, Anna wanted to leave. Her fear of babies (there were none present) led to an initial resistance to sitting down. We ended up getting seated next to a huge party... maybe 20 people and it was loud, though there were no babies. She began putting her hands on her ears and asking to leave. Looking at Jenny, who was so looking forward to eating out and looking to Dominic, who was really excited too, I sighed and went back up to the hostess and asked to be seated elsewhere in the restaurant where it was quieter. With relief, we got a booth that was a lot quieter, but Anna still wasn't happy. After ordering drinks, she began clutching her stomach and crying. I feared that she was going to throw up, wondering what in the world would bring on this sudden onset of pain. Right after our food arrived, I got her up out of the booth debating on whether to take her outside for a walk or to the bathroom. I had to really talk her into going to the bathroom because she has a huge fear of autoflushing toliets (we had quite a scene at the Oasis when my MIL was here because they did have those kind of toliets... you'd thought she'd seen a monster, her fear was heartwrenching). I got her calmed down in the bathroom and we went back to our booth. She didn't want to eat and Jenny had just about finished her meal so she took Anna to the car to wait on me and Dominic. I got our meals in to-go boxes and paid the check. Oh well.

After getting home and already feeling pretty defeated, I put the stuffing in the new doll and Anna became obsessed with showing the doll to the neighborhood kids. It was already time for bath so I said no, we'd do it tomorrow. While getting her medicine ready, she went outside without permission. She ended up in the neighbor's driveway, bouncing her soccer ball against his garage. I warned her, gave her to the count of three, and she laughed at me and refused to come in. So I had to stomp over there and threaten her (I took the new doll away for the day tomorrow) and she threw the ball right in my face. I staggered backward, it was a direct hit and it hurt... a lot. She ran toward the house laughing. And I filled with anger, so much anger. I felt like crumpling to the ground, I felt like running away, I felt like yelling at her and being mean. I just became silent.

I had to man-handle her up the stairs and into her room. She continued laughing and calling me "idiot girl" and "stupid-head" and saying that I would not be her best friend, ever again. I stayed silent. I handed her medicine to her and she batted it away. She began trashing her room. I left the room, quietly, closing the door, holding her medicine, and sitting by the door, and I waited. Ten minutes went by, then she opened the door like nothing was wrong. "Are you mad at me, mommy?" I was still so angry, I stayed silent. I led her to the bathroom, helped her wash her hands and brush her teeth and take her medicine, then I put her pullup and jammies on her and put her to bed. I read one book, then turned off the light. I felt awful. I don't think I've ever skipped her routine before.

As she went to sleep, I feel this poison run through my blood. I don't hate her, but I do hate her behavior. She challenges everything I know about parenting and even parenting special needs. Some days, I feel ill-equipped. Some days, I feel like giving up. But of course, in a couple of hours, she will be up again, and she will need me. And I will be there.

Way Back Wednesday, the search for a diagnosis

We spent the morning in the cardiologist's office for an echocardiogram and EKG on Anna. The geneticist wanted to make sure the connective tissue disease we have in our family isn't affecting her heart like mine (I have a mitral valve prolapse). The echo and EKG were normal so that is one more thing checked off the list. It made me remember when Anna was 3.5 and had started having seizures. I was wondering at that time if we should continue searching for a diagnosis... when we get a new symptom, I always struggle with this decision. How much trauma do we put Anna through and how invasive do we get in order to find out what she has? Here's a post from 11/29/04 on iVillage's Child Hypotonia board:

~~~~~

DH and I are considering opening up the diagnosis search again. Anna had another seizure on Friday (this makes 6 tonic-clonics total, 5 since the end of September). With this new label of epilepsy, it adds a new piece to the Anna puzzle. Could a geneticist now look for something that hasn't been looked at before?

Finding an answer wouldn't change how we are managing Anna's care, except for the seizure control piece. (I'm going to start a separate thread about that.) It would help us know what to expect (what we all are wishing, right?) and maybe help us find more balance in our lives than we currently have.

It means that we would need to seek out someone with more experience or expertise than the folks we've been dealing with, because they've all said, "I don't know." It means maybe putting Anna through more invasive tests. It most likely means that we still won't have a diagnosis at the end of it all.

Her symptoms include: epilepsy, hypotonia, microcephaly, global developmental delays, sensory integration dysfunction, high myopia (-7.5 rx), failure to thrive (resolved at age 3), feeding and sleep issues.

She has tested negative for: metabolic disease, mitochondrial disease, Rett Syndrome through MECP3 gene, Angelman Syndromethrough methylation and UBE3A sequencing, chromosome analysis, glycosylation defect, and 7-dehydrocholesterol. She has had two normal MRIs and EEGs.

I wanted to get your opinions, advice, cautions, and two cents. It seems like with the seizures happening more frequently, SOMETHING is going on, we just don't what. Is the epilepsy a symptom of a syndrome or just plain ole epilepsy? Obviously, we need to control her seizures... more about this in my next post. I need a reality check. Thanks.

Holly and Anna, 3.5, no dx.



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I have a whole slew of new tests that she's tested negative for but I would still like to know. Thanks for reading.

Way Back Wednesday

I got the most incredible email from somebody on Facebook recently... one of those "isn't it a small world" moments. This mom has a three-year old daughter with complex issues and she was researching PDD-NOS. She came across my YouTube videos (which is too cool! we show up in Google search results for PDD-NOS!) and watched Living with PDD-NOS: A Trip to the Park. She said it reminded her so much of her own daughter, just an older version. She followed the link to my blog here (hi, Nicole!) and realized I looked familiar. We have actually talked before a couple of years ago when I was running a fundraiser for Brigid who is diagnosed with MELAS, a degnerative mitochondrial disease. Come to find out, this mom who wrote to me also lives in the same city as me! I can't wait to get to know her better and be a support to her.

Anyway, this brought back some old memories for me. I remember when Anna was 2-3 and being desperate for information, hungry to talk to parents with older children with similar issues, and not finding many parents out there. At that time, I was an extremely active member of iVillage's Child Hypotonia message board. I thought it might be useful to look some of my old posts and share them on Wednesdays as a new feature... Way Back Wednesday! I'm also going to add a bit of commentary and maybe some old pictures too. It could help moms with younger kids know they aren't alone and also show where Anna was then compared to now.

I found this post from December of 2002. Anna was 21 months old. At that time, she had some global developmental delays (including speech, some physical stuff, and social skills) and hypotonia. We did not yet know about the PDD-NOS and she didn't start having seizures until she was 3.5.

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Hi everybody... I've been gone for awhile, here's an update on Anna...

My last final exam is tonight... YEA! What a tough semester this has been. I've been lurking on the board, but have been too busy studying to post anything lately. It sounds like everyone is doing pretty good and getting ready for the holidays. I should get an A in both Pharmacology and Microbiology. Woo-hoo! Now I can relax and concentrate on Christmas. (BTW, my older daugher, Jenny, turned 11 last week. Wow, how the heck did that happen???)

We made a family decision a few weeks ago that I will be taking a long break from school to focus on Anna. We all agreed that putting her in daycare will not help her flourish and besides it would break all of our hearts. I'm not sure how long I'll break from school, maybe until she starts kindergarten in the fall of 2006. If she starts catching up and things look good for her to go to preschool, the plan may change. In the meantime, I'm going to focus on "home-schooling" her, being her full-time OT, ST, and teacher. I'm going to enroll her in a Gymboree class for gross motor development and socialization. I'm going to take her out more, expose her to more kids (and probably more colds-LOL), and try, try, try to help her catch up a little.

In the last couple of months, Anna has started babbling lots more, and it almost sounds like jargon talk. She has finally started making the "ma-ma" sound, though it comes out like "maaaaa" -- hey I'm counting it as mama! She's picked up a couple of more signs, like milk and dog, so her total signs are up to 15 or so. Her foot isn't turning in quite as bad as it was before, though when she's tired, in it goes and down she falls (this morning, she fell twice). She's still not eating much in the way of solid food, but she's taking a bottle with Pediasure, formula, or milk with no problem. The whole sleep issue is still atrocious. She's up anywhere from 1-3 times a night, but she doesn't always want a bottle each time. This last week, she has started crying out in pain (or what sounds like it) and is nearly inconsolable for several minutes. It's very sad and I'm not sure what's going on or how to help her. She only does it once and it's usually early, 1-2 hours after she's gone to sleep. Ugh. Her daytime schedule is still really erratic too. Sometimes she takes 2 naps a day, sometimes just 1. It depends on how early she gets up for the day (anywhere from 5:45-7:30). I'm so much looking forward to not having to study when she's sleeping... I see a lot more naps in my future. :)

We're still waiting on the results from her genetic tests. The FISH for Angelman's came back negative, which we figured since she doesn't have seizures or hypopigmentation. Once we get the results from the other tests, we may go ahead with the DNA methylation study for Angelman's... a lot of her symptoms fit the gene mutation version of the syndrome. I'll let you know. Well, this turned into a novel. Sorry! I'll be a better friend in this community again now that I'm done with school. I love you guys and thanks for all your support!!!

Holly and Anna, 21 months, hypotonia, global delays, no dx.

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So interesting to go back and read that! We did proceed with the DNA methylation study for Angelman Syndrome and it was negative. I was taking my pre-requisites to apply to nursing school, I got accepted, then deferred and declined in order to focus on Anna. I had forgotten that she still took a bottle (in fact, Anna stayed on the bottle until well past her second birthday) and that Pediasure was her main source of caloric intake. She was only 21 pounds at 21 months. Oy, those sleepless nights! Anna slept like a newborn, up several times a night, until she was three or so? Here are a few pictures of her from that age:

She has always loved to dance! Here we were at a performance of Jenny's... Jen used to take a sign language class (so that she could help teach Anna sign language and communicate with her as well as others) and the class would perform several times each semester.


At Christmas, opening a musical present. You can see that she is initially scared of the bongo toy as she is reaching up behind her to grab at Daddy. She still grabs us when she's scared today.


Another musical toy, another grab at Nana.


She grew to love this Mozart music cube!


Thanks for accompanying me on my journey to the past! I'm looking forward to another post like this next Wednesday.

Where do you start?

Because I've chosen to make our story public, and especially because of the PDD-NOS videos I made of Anna on YouTube, I get a lot of emails from other parents who have questions or want to say thank you (you're welcome, btw). Recently, a woman contacted me about a little girl she is adopting from another country that has microcephaly (basically this means a small head circumference... Anna's head circumference fell off the chart at 6 months of age and hasn't been back on since), cerebral palsy and other issues. She is trying to find out as much as possible about the potential challenges of parenting a child with special needs and is reaching out to other parents for support. I was so honored to be contacted and wrote up some initial advice for her specific to cognitive challenges and thought it might be useful to share here. I wish her the best of luck in her adoption and know she will be blessed beyond measure for opening her heart and home to this special little girl.

Let's see, a few things come to mind that you should do when parenting a child with a cognitive disability. First, contact your state- or county-run program of services for mental health and mental retardation (MHMR). We live in Texas and ours is funded through the state and run by the county. They recently changed their name from MHMR to Integral Care to keep up with the (thankfully) progressive movement to ban the "R" word. We have decades-long wait lists for services so the sooner you can get your child signed up, the better. We first took Anna to MHMR when she was five; she was given some IQ tests to verify eligibility and we were assigned a caseworker. She meets with us monthly. We get community service and respite hours where networked providers can come to our home and work with Anna on specific goals... anything from eating in a restaurant, to academic goals, to self care, to a break for us. There have been a lot of changes in services lately and we've lost quite a bit of hours. Luckily my mom is a huge support and has contracted with the state to be a network provider so she is our respite person (and she lives next door!). That is a very good thing for continuity and convenience. Don't hesitate to ask family for additional support.

Up until age 3, each state offers early intervention programs to help with speech therapy, occupational and physical therapy, social skills, and academic skills. Contact your local ECI (early childhood intervention) office to schedule an intake as soon as you as you have concerns. They will get you set up with home visits to start on some goals. If you have good insurance, you should also get private ST, PT, and/or OT. If your child has sensory integration dysfunction, they can get specialized therapy with an OT to help with that. Until your child starts school, you can really make an impact with therapy.

As soon as your child is 3, contact your local school district to see if they offer a PPCD program (preschool program for children with disabilities). Between the ages of 3-5, the school district will take over where ECI leaves off... continuing therapy and placing your child in a preschool program geared to help maximize potential. You'll soon become familiar with the IEP (individualized education program); the IEP will dictate academic and social goals for the school district to work on from age 5 on.

I also encourage you to join a support board. iVillage is where I got my start and I met the most incredible group of mothers whose children have similar issues. I started with a child hypotonia board, added developmental delays, and finally added the seizure support board after Anna's issue got more complex. This group of women I've known since Anna was 15 months old and she is now 9. We actually meet once a year in person for a retreat without husbands or children. It's so nice to be with other moms who "get" it.

I have lots of resources, so if you need more information or know any parents who may be looking for information, please don't hesitate to contact me. My email is holly0817@hotmail.com. Good luck to all of my sisters in motherhood parenting children with special needs.